The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

Lomustine (CCNU)

Sofigirl
Sofigirl CSN Member Posts: 1
in Brain Cancer #1

Husband has anaplastic astrocytoma Grade 3. Did 6 weeks radiation plus Temodar. Then Temodar 5 days out of every 28 day cycle for 6 cycles. Tumor has progressed. Soon he will begin Lomustine once every 6 weeks.  Anyone with experience on this drug? Side effects? Tumor is in right frontal lobe..."movement area" ...and we were told inoperable. 

Like Care

Comments

  • sisterandbestfriend
    sisterandbestfriend CSN Member Posts: 2
    edited October 2017 #2
    Lomustine

    My sister is starting this treatiment..How is your husband doing? And what is his dosage?  Am sooooo sorry for it all...lots of love, Judi

    Like Care
  • Biggbuff
    Biggbuff CSN Member Posts: 3
    #3
    Hello Sofigirl,

    Hello Sofigirl,

    My wife is in the same situation, can I ask how the Lomustine experice was for him? 

    regards 

     Anthony

    Like Care
  • H0829
    H0829 CSN Member Posts: 4
    #4
    Lomustine + Eflornithine

    Similar situation to above.  Husband diagnosed 8 months ago and we did Proton beam radiation with TMZ and after four TMZ cycles recent MRI shows enhancement and 2 new foci.  Clinical trials recommended or Lomustine on its own.  Sounds like we would need to wait another 6 weeks to be candidate for Lomustine + Eflornithine blind trial but since we don't know efficacy and heard Eflornithine causes deafness not sure if good option.  So hard to navigate options and concerning to start new drug that may then exclude us from other trials.  4.5 months post radiation and would like to think pseudo progression but likely not.

     

    Like Care

Discussion Boards